14 Things I Hate About Being Autistic

Sunday

Here are reasons why being autistic can be difficult and upsetting, from a woman who knows.

I am an autistic woman. As many already know, being autistic can be difficult and upsetting. Here is a list of 14 reasons why.

1: Most don’t accept who I am unless I tell them that I am autistic.

“I’m not too good at socialising sometimes.”

“This place is too loud for me.”

“I’m sorry, I didn’t know that would be offensive to you.”

“The lights here are too bright and I am overwhelmed”.

“I am unable to take in anything from a Lecture; can I have it in writing or as audio please?”

“I cannot do an interview like that; is there another way that it can be done?”

“I have very erratic hand writing; so I will need to type this instead.”

“I cannot talk right now. Please stop speaking to me.”

“Yes, I know I did that last week, but I cannot do it today.”

“I am having a very bad day; please leave me alone.”

"The smell is bothering me and I can't function because of it."

“Going out won’t help me.”

None of those “excuses” are usually valid in regards to my difficulties, until I reveal that I am autistic. It would be really great if people were respectful of my differences, whether they knew that I was autistic or not.

2: There are a whole heap of people who believe that autism doesn't exist. I suppose this is because they cannot see it. It definitely does exist, and I am autistic – I would know. It hurts to encounter people like that so often. There are also people who like to think that autism has somehow been caused by parents or by television or by upbringing (so in other words, that it doesn't exist). I am sure many of us know the type – the ones who say things like “Well, if you disciplined him better...”, or “Back in my day that was just called being a brat”, or even “Give me a try and I’ll set her straight.” These are so false that it is laughable; but it hurts nonetheless.

3: People apologise when I tell them I am autistic.

“Oh, I am so sorry to hear that you have autism”, they say with pity.

There is no need to be sorry for who I am; I’m not sorry.

4: It is regularly assumed that I have no feelings, that I do not possess the capacity to understand that other people feel differently to me, and that I cannot feel empathy. These things are very false and that is not scientifically up for debate these days; but it hurts to be thought of as less than human – I’m not less.

5: People ask me what “damaged” me to make me autistic. I’m not damaged; and to constantly suggest that others like me need to be prevented from being born or prevented from “developing autism” or that others like me are poisoned versions of a “real” person; is hugely offensive, not to mention ableist. (Which loosely means to discriminate based upon disability, or to comment from the perspective of a non-Disabled person with no understanding of the life of Disabled people). It is hard being disabled in an ableist society.

6: It is usually assumed that I have "conquered" or "defeated" autism, and that I am who I am in spite of autism. A phrase I hear a lot is "I would never have known that you were autistic", as though autism is this hugely negative and obvious thing that a non-expert would be able to pick in a second. This is well-intentioned but problematic because it carries the underlying assumption that I am a happy and successful person despite my autism. In reality, autism is a part of everything that I do. Autism is not an enemy that needs to be defeated. My autism hasn't been conquered or "overcome". This issue is also symptomatic of the wider ignorance as to how autism presents – in reality, most of us would not be able to pick an autistic person out of a crowd.

7: It is impossible the escape the arguments against “labels”, touted by people who are not autistic. I am often shut down when I open up to someone about the fact that I am autistic. This is irritating because I have yet to speak to an autistic person who wishes that they did not have their label for their own knowledge. It is assumed that autism is bad, and so who would want that? We (autistics) are very different in the way we see the world; and the world is not made for us, or by us. We live in a society run by non-Autistic people, where everything constructed anywhere, is assumed to be needed by non-Autistic people. "Not autistic" is the default around which society is defined and developed. To deny us a label in that kind of a world is akin to denying us the right to need different things; in essence, the right to be different in the first place. When autistic adults everywhere embrace their label and describe the knowledge of being autistic as “empowering”, that can really tell us something. Knowledge is power, especially in a scary world that is often not suited to our needs.

8: The feelings and well-being of autistic people, are seen as less important than autism research and as less important than preventing or curing autism. This one sucks for us, for obvious reasons.

9: I am constantly told to stop saying “autistic” and to use person-first language. I’m not defined by autism, they say. I am more than my label, apparently. This is quite annoying. I am the autistic one firstly, so I can refer to myself however I like. Secondly, the choice to refer to ones self as autistic instead of person with autism is a deliberate and reasoned social movement. We as autistics (in general), do not believe that autism is inherently negative. We also resent attempts to separate autism from our person-hoods (being disabled does not make one any less of a person, so why do we need constant reminding of that?). Just as we do not separate person-hood from other labels, because it is a given that we are all people too, and just as no individual label wholly defines or doesn't define us so too, we claim autistic as one such word. I want to be called autistic, and so do millions of other autistic people from all around the world. Listening to this is far more important than telling us that you would know what is better because you got told so in your training, or because you don’t want your child to be “defined” by autism, or because you work with autistic children. It is extremely difficult to be told so often by non-Autistic people that I shouldn't be saying Autistic, especially because I know that this has the opposite effect to what is intended - it stigmatises autism and treats autistic as a dirty word. I choose to refer to myself as autistic, on purpose.

10: People assume that non-Autistic norms are superior and preferable, and autistic norms inferior and undesirable. For instance, when we can communicate more effectively via typing or writing or a Communication Device, we are told that we “must learn” how to get by in the “real world”. Even obvious non-verbal communication such as crying, showing affection, and being obviously stressed or anxious; is very often ignored on purpose in order to try and force autistic people to "use their words" or to use some other non-Autistic preferred means to speak. Our ability to communicate effectively is often deliberately taken away so we can communicate in the way others prefer. When we have physical issues like sensory sensitivities or anxiety, we get told we need more “exposure” or that we need to “try harder”. Many autistic adults have PTSD and/or have learned how to immediately shut down against threats, due to high sensory needs that were ignored in childhood. Why can’t our differences just be accepted as valid? Why are they always measured up against non-Autistic norms and then found lacking? Why do we have to endure being called “lazy” because we don’t want to force ourselves out of our natural skills and ways? Constant exposure to unpleasant things just because someone thinks we need to learn it, is not helpful. It feels bad to not be accepted in most things that I prefer and that I do.

11: A lot of people seem to think that autism is no big deal. I often encounter “Well, we are all different”. Alternatively, I also often hear “We aren’t all that different from one another”, and sometimes "We are all a little bit on the spectrum." These things seem very condescending, as well as invalidating. Of course we are all different, but the way that autistic and non-Autistic people differ from each another is very different to the way that non-Autistic people differ from one another individually. So, yes, we really are all different – but the degree of difference is why autism is recognised. And yes, we actually are very different from non-Autistic people. I know this because most of my life has been spent with people measuring me up against non-Autistic standards, and telling me to act like non-Autistic people. I have also spent my life analysing the behaviour of non-Autistics, whose natural ways of interacting with the world are seen as inherently right while mine are seen as inherently wrong.

12: Everyone seems to hate autism with a passion. Everyday, sometimes multiple times, I hear in normal life, or I read on a news website or on social media how horrible it is to parent an autistic child, or children. I read “I hate autism”, “I wish autism didn’t exist”, I hear that autism is a disease, an epidemic, a health crisis, an emotional drain, something that ruins families, or comparable to cancer or heart disease. I hear that having an autistic child is comparable to your child dying, and that parents need time "to grieve for the child that they will never have" when they are delivered the news that their child is autistic. I hear that autism needs to be “cured”. I hear that autistic children are failing to slot, like jigsaw pieces, into systems not made for them and that do not suit them. I hear about things that are completely inappropriate for autistic children, and then I hear how the reaction that the autistic person has to this, is why autism is so horrible, why everyone hates autism, why we need to wipe out autistic people from our population. I have to see ignorance about autism everywhere I go, and then I have to hear about how autism and autistic people are to blame for the outcomes of this ignorance.

13: The “experts” are thought to know more about autism than actual autistic people. The therapies and parenting advice they then give, reflects this. As an autistic person, my knowledge of autism is seen as unimportant, and definitely as far less important than what the “experts” know, or presume to know. This makes me feel downtrodden, and it is basically ignoring autistic people and their experiences. It is also not a very clever move; and acts to keep knowledge of autism to what non-Autistic people can observe in a clinical setting.

14: I feel hated, ostracised, and silenced. There is this thing that happens, when autistic people like myself try to share our knowledge about autism, try to verbalise or somehow articulate these issues that we know about because we are autistic and because we can offer unique insight. We get silenced. We get told we are “too high functioning” to understand. We often get told that we are “nothing like” somebody’s autistic child (of course I am not like your child; I am an adult. But I was an autistic child once upon a time.) Predictably, just like many other minority groups from various places in history, we get called "crazy activists" a lot. We even get told that because we are autistic, we could not possibly understand. We get told that we are lacking perspective of the bigger picture, or that we lack the ability to see another point of view. When we say that we like who we are and are glad to have been born despite challenges, we get told that we must be one of the lucky ones. We are a hugely marginalised, silenced, and bullied, population. We rarely get the chance to have a voice. We also get regularly told things such as that our tone or facial expression, or means of bluntly communicating; is wrong, despite the fact that autism has inherent communication differences and that we constantly are working extremely hard to exist in the non-Autistic world. All of this is hard to live with, because it is hard to feel a sense of belonging and acceptance when you know that most people think the world would be a better place if you had never been born at all, or if you would just shut up and comply with what they all want. Or if you could just change everything about who you are.

So, yeah, these are some reasons why it is hard being autistic. I truly hope that by the time my four wonderful autistic children are adults, acceptance will have replaced the awareness that everyone seems to be focusing on, and that they will be embraced for precisely who they are - autism and all.

Ally Grace blogs at http://suburbanautistics.blogspot.com.au. She was happy to share this piece with the Ionia County Peace Community from her home in Australia.

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